A recent study published in New Scientist magazine discovered that mice with Endometriosis proved to be more anxious and depressed than mice that did not have Endometriosis. Behavioural changes in the mice with Endometriosis led to this conclusion. It is believed by the authors that Endometriosis actually reprograms the brain, but it’s unknown as to how these changes occur.

Others believe that the anxiety and depression women with Endometriosis experience may be tied to their pain and infertility issues. They believe that the way the body perceives pain has been altered, which affects anxiety and depression.

The authors hope that their findings now instigate more research as to how Endometriosis affects the central nervous system; not just reproductive health.

I myself will be doing more research into this topic, too! Expect more ahead!

Resources:

issuu.com – (Article; November 2017) Endometriosis Affects the Brain (if you’d like to read the article, it’s on Page 16)

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

A newly published study about a 35-year-old woman with a case of crazy-insane-aggressive Endometriosis hit my inbox. I was going to fit it into a previously-written blog about hysterectomies and Endo or extra-pelvic Endo…but it was so fascinating that I decided to create today’s blog entry.

Initially, this young woman had abdominal surgery to remove her right ovary because of a ruptured ovarian cyst. She subsequently had three additional surgeries to excise Endometriomas (chocolate cysts) and adenomyosis via a total hysterectomy which also took both of her fallopian tubes and remaining ovary.

After her 2007 surgery, her pain levels were still severe and present. Her physicians started her on daily doses of 2.5mg Letrozole, even though she was already on Danazol every day. It provided her with some relief and in 2012 she asked that her Letrozole dose be increased to 7.5mg. Her physicians allowed it, but with it came increased side effects of weight gain, headaches, extremity pain, dizziness, insomnia, and memory impairment. She asked that they decreased the dosage to 5mg.

With the decrease to 5mg, her Endometriosis relapsed and was found present in her abdominal wall, vulva, and labia majora. They increased her Letrozole dosage back up to 7.5mg and surgery was performed (and continued to be repeated in the future). The only pain relief she ever received was after surgeries to remove the Endo lesions and while she maintained an increased dose of Letrozole.

This poor woman had a total of 175 (yep; you read that right) surgical procedures from 1998 to 2013 to treat her aggressive Endometriosis. Her only pain relief was on a triple-the-usual dosage amount of Letrozole which she then had the severe side effects from the medication to deal with.

I cannot even imagine!!! Although I do wish the study outlined further details: what types of procedures, ablation or excision, diet, exercise, lifestyle, family history, etc. A lot of different factors may affect pain and symptoms (although I’m not belittling her experience at all) – I would just really like to know…

If you’d like to read the entire study (and see the photographs), please click on the link below.

Resources:

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

In June 2017, two new studies were published both focusing on the effects of partners of women with Endometriosis.

In the first study we’ll be discussing (from The Journal of Obstetrics an Gynaecology Research), 51 partners of women with Endometriosis completed and returned questionnaires. A breakdown:

75% reported a negative affect on their own day-to-day life;

52% felt their finances were affected (partly due to the fact that their partner’s weren’t able to work as much, if at all);

Although 70% of the partners were involved in the healthcare decision-making process, only 34% felt that healthcare providers had engaged them in that process;

80% stated they hadn’t received information about dealing with Endo as a couple;

74% reported on affect on sex life, mostly due to the pain it causes their partners. (All except 8 partners said they could not have sex because of the pain it caused);

56% reported on affect on their relationship; and,

It suggested that better education and support be provided to partners of women with Endometriosis. And it stated, “Involvement of partners from the beginning, normalization of symptoms, and education may assist in dealing with the burden of the disease.”

The second study, published in the Oxford Academic publication, Human Reproduction, included 22 male partners of women with Endometriosis answering questions. In summary:

Nearly half of the participants stated sex was rare to non-existent. This was due to pain, lack of desire due to medication, fatigue, stress, bleeding before/during sex, or even just feeling unattractive. Four of the men stated matter of factly that they don’t want to pursue sex because it hurts their partners;

It affected the ability of many to have children, or frustrated efforts to conceive;

Many men reported a difficulty in their work due to taking time off of work to be with their partners, childcare, or household tasks. Many of these men felt an added pressure to provide more income due to their partner’s inability to work as much (if at all);

New roles in the relationship developed since the diagnosis: accompanying them to appointments, taking time off work to care after surgery, household chores and tasks, child care, and a much deeper support role emotionally;

The majority of men felt there was a lacking of support for partners of people with Endometriosis.

And my favorite? Many described that since the diagnosis, they’ve learned to become better partners: caring, listening better, more supportive, has brought them closer, strengthened the relationship.

I am grateful for an understanding and supportive partner, but I also know that many women don’t have a partner who is as understanding. And that breaks my heart.

If YOU are the partner of someone with Endo and are searching for support, consider joining the Braave support network (they’re on Facebook here); it’s specifically for partners of EndoSufferers. If you know of any other support groups for partners of people with Endometriosis, please let me know! I’ll add them here.

And, both studies are linked below in our Resources section, if you’d like to read them.

Resources:

Braave – online support network for partners of women with Endometriosis

While doing a bit of research for a recent blog entry, I ran across a study from 1946 describing Endometriosis. I found it fascinating!

Written by Drs. Fallon, Brosnan, and Moran in Massachusetts, The New England Journal of Medicine published the study on November 7, 1946, and I wanted to point out some quotes that I found of particular interest:

To read the entire study yourself, please click here. Groan if you will at reference to retrograde menstruation, treatment with castration, becoming a baby-factory, regression of the disease once the ovaries are removed, and…a cure. I just severely enjoyed the verbiage and disease descriptions from 70 years ago and wanted to share it with you.

An article published in the April 2017 edition of The Obstetrician and Gynecologist offers a great breakdown of Endometriosis, the diagnostic journey, and treatment (both conventional and complementary) options. It also encourages the use of support groups, mental healthcare professionals, and multidisciplinary medical teams.

If you’re interested, I encourage you to read the entire article here. You may learn some new things, or just get affirmation of your present path of treatment.

On April 6, 2017, Oncotarget published an article which I’ll be briefly discussing here today.

Researchers took mice and implanted Endometriosis cells inside of of their pelvic regions wanting to see if the Endometriosis cells would migrate to extra-pelvic organs. They later analyzed the organs for microscopic Endometriosis-derived cells throughout the mice and found that it had migrated to the lungs, spleen, livers, and brains in many of the mice.

The authors suggest, “…that endometriosis in locations distant from the pelvis may be more common than previously recognized. Endometriosis should be considered a systemic disease that is often subclinical.” They suggest that these Endometriosis-derived cells residing in other organs may influence symptoms of Endometriosis, such as fatigue, eating disorders, sociopsychological issues and other symptoms which lessen our quality of life. It also discusses thoracic Endometriosis and Endometriosis on the liver, and those side effects. Further research, of course, is always needed.

The entire published study is free for us to read and is very, very interesting. I fully encourage you to click here and read the study and the conclusions. And please feel free to correct me if you feel I’ve misread the science-y bits. ❤

Resources:

Oncotarget – (Article; April 2017) Micrometastasis of Endometriosis to Distant Organs in a Murine Model

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

An article was published on October 30, 2016 in the International Journal of Clinical and Experimental Medicine, which caught my interest. We know that Endometriosis can grow in a lot of places other than the reproductive organs and pelvis. This study found Endometriosis growing within a muscle: the psoas major muscle.

The pso-what-is muscle? Well, that’s what I said.

It’s a pair of muscles that run from the lumbar spine, along the back of the abdomen, and end inside the hip area. It helps flex our hips, aids our walking and running, and can improve posture. In some places, it’s as thick as a wrist! As a side-note, weak psoas muscles can cause back pain, hip pain, limited movement in the hips, tight/deep pelvic pain, belly aches, constipation, and a twisted pelvis. Dr. Axe offers some tips, tricks, and stretches to help strengthen your psoas muscles.

Okay, now back to the study!

A 49-year-old Chinese woman was admitted to the hospital because she had increased CA-125 levels. If you’ve followed my previous blogs, you’ll remember this could be an indication of the presence of Endometriosis. Seven years prior, she had a hysterectomy and oopherectomy (removal of her right ovary) – she had a uterine myoma and ovarian Endometriosis.

After screening and testing, the doctors found a mass in the left side of her psoas muscle and thought she had a tumor. She didn’t have any of the usual signs and symptoms of Endometriosis. She was discharged from the hospital (at her insistance).

Three months later she returned for an MRI. The mass had grown by 3cm and was also involved with her iliac vessels. Her CA-125 levels were still increased. And her physicians needed answers. An exploratory laparotomy was performed and the mass was visualized in her psoas major muscle. It was 10x10x8 cm and was inside the muscle tissue. They continue to fear it was a tumor.

Rather than remove the mass in its entirety, a portion was removed and biopsied: confirmed as Endometriosis. She received more than 3 months of Lupron Depot and the remaining mass decreased in size and her CA-125 levels stabilized. The authors surmise the lesion may have transplanted during prior surgeries and hope this case report sheds further light on the illness.

Yet another example of extra-pelvic Endometriosis, as well as post-hysterectomy Endometriosis. Here’s to hoping this case study continues to push the medical and scientific community into further research and greater funding toward better understanding Endometriosis – and one day finding that much-needed cure.

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 🙂 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa

You may have read some of my previous blogs about biomarkers…blood tests for things which may help doctors diagnose Endometriosis without surgery, such as CA-125 levels. There are a lot of hopes that indicators may help save costly diagnostic surgeries, surgical risks, and painful recoveries.

A study published on May 1, 2016, reviewed 141 past studies and analyzed the data.

It does not look good for us, ladies and gents. Well, not yet at least. It concludes, “Overall, there is not enough evidence to recommend testing for any blood biomarker in clinical practice to diagnose endometriosis.” If you’d like to read it for yourself, please click here.

A study published on July 27, 2016, however, holds hope that the CA-125 test may “rule in” Endometriosis. You can read it here. It is supported by a December 2016 study, which you can read here. Unfortunately, a 2017 study (read it here) found that due to the fluctuating levels of CA-125 throughout a woman’s menstrual cycle, as well as the fact that CA-125 is not exclusive to Endomtriosis, does not make it a recommended diagnostic tool (yet).

A November, 2016 publication stated that women with Endometriosis may have elevated MiRNA (micro RNA) gene biomarkers. Strides are being made to identify proteins and glycoproteins (like CA-125) that may be more prevalent in women with Endometriosis. Although inflammation is a major syptom of Endometriosis, research into cytokines and chemokines (which may point to inflammation) appear equal in women with and without Endometriosis. However, potential is being shown for using IL-8, TNF-α, and CA125 as a combined biomarker panel to help diagnose the presence of Endometriosis. Research into identifying biomarkers in urine and peritoneal fluid is also ongoing. All the science in this is waaaaaay over my head…but if it leads you to a specific conversation with your doctor, or delves you deeper into researching it yourself, my job here is done! You can read it here.

Hoping that future research can continue to push forward on non-invasive diagnostic tools.

*Updated April 6, 2017*

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa